Happy Birthday, Zoe

Zoe had a fabulous birthday party, thanks to Mom, Grandma and friends. Grandma found a wonderful "no sew" pattern for tutues and themed the Naughty Nancy party grandly. Photos will follow. Last year the party was in the hospital so this year's party is even more special.

Zoe did have another trip to Cleveland Clinic, and multiple tests....again. We are closer to a concrete diagnosis, but not until all tests come back.

We will post as soon as we have any news.

Further Medical Words

Updated information about our favorite little red-head, from Grandma:

At this point U of M Mott's Children's Hospital has had two or three tests come back with the same diagnosis for Zoe. They are now saying she has VLCAD or very long chain fatty acid oxidation disorder. This is kind of back where the doctor's here thought it might (but hoped it wouldn't) end up.

To explain this in simple terms, we all use the glucose from food eat first as a form of energy and when we run out of that we use the fats we have eaten. Zoe's body cannot use the fats efficiently or at all, especially those that are of the long or very long chain variety. So when she depletes her store of ready energy or goes a long time in between eating, her body has a crisis. That crisis would occur every night if she did not get nutrition all night long.

The other time that it is critical to watch her is anytime when you might not feel like eating ie. a sore throat, the flu, a fever, a cold. In this particular disorder the fats attach themselves to the heart and liver and maybe some other organs, which can cause further complications.

It is considered under the mitochrondial disorders and is a rare genetic type of thing. I am not sure how the low blood count and needing transfusions works into all of this.So far we know that she is the only known case in Michigan. And that there is a doctor at the Cleveland Clinic that is known for working with fatty acid oxidation disorders. Zoe's doctor here is contacting him and would like him to see Zoe and consult on her case. This is causing some concern and unhappiness at U of M. This doctor is speaking at a conference in Pittsburg the middle of July and we are going to go hear him and others talk about this whole thing. As far as daily life goes, she is doing great on the days when she is out of the hospital and she would continue to amaze you with her spunk and spirit. She seems to be going through a nice period where it is about 2.5 - 3.5 weeks in between hospital stays. Which is good.

The only thing I have noticed with this is that she usually needs to stay in a little longer than she used to once she gets to the point of needing hospitalization. I am still supposed to finish up some genetic testing at U of M to see if this will shed any light on her condition. It is good to get some answers and move ahead.

Some Test Results - finally

One of the possibilities doctor's were exploring was a type of hypoglycemia. Doctor's have now ruled out that condition, and are settling on this diagnosis:

Undiagnosed Mitochondrial Disorder

This is a genetic metabolic disorder, with Zoe's body not able to process all that it's supposed to. She still needs a feeding tube and that extra feeding during the night.

This isn't stopping her, that's for sure. This summer her plans include ballet lessons, though she thinks maybe she'd rather stay at home:).

Happy 3rd Birthday

April 30, 2008

A particularly bad spell put Zoe into the hospital the week of her birthday, but it didn't stop the party. Zoe's friends came to her, and the hospital was VERY cooperative in letting her have her celebration in her room.

Happy Birthday, sweet one!

More Tests

Zoe spent some time this last week in Ann Arbor, hoping to lose her feeding tube. She has not been able to go through the night without an extra "meal," and doctors wanted to see if she was big enough to possibly handle it. So, out came the feeding tube, and the test was on.

A fasting test, actually. Zoe was supposed to go the better part of a day without eating, under careful watch, of course. But she only made it a few hours before her blood sugar level dropped. Crouchy? Oh yes! A hungry 3-yr. old isn't anyone you'd want to mess with:). Doctors decided she needed her meals, and will continue with the nightly feeding via the tube for a while longer.

So Zoe got to eat, and everyone was happy!

Flowergirl

August 2007

Zoe and her family were in a friend's wedding this year. What a sweet flowergirl she made, with her brother carrying
the rings.

Zoe Update

The road Zoe travels daily has its ups and downs. A delightful child, she is strong willed and very feisty. This she has needed as she battles this still undiagnosed disease.

Currently back in Ann Arbor for treatment following a very harrowing relapse, we are once again waiting for test results, results which may lead to the diagnosis she needs in order to be released from her current course of treatment, and sent to Philadelphia Children's hospital for more specific care and treatment.

Zoe's friends are working tirelessly to support her mom, dad, brother, grandma, uncle and great-grandpa.... and all the others that form her support group. Keep coming back to this blog for continued information, as we have it.